Part One: Optic Disc Drusen (You Don’t Know What You Can’t See)

woman looking through binoculars

‘It looks like you’re missing half your vision,’ says the optician. She’s looking at me like I’m crazy. Like, how could you not know this?

I struggle for an appropriate response to this simply unbelievable piece of news.

‘Do you drive?’ she asks, suddenly horrified. ‘Haven’t you noticed anything? Bumping into things?’

She’s talking as though I’m a person missing an entire limb and haven’t noticed. I suppose to someone with a full visual field, the idea that you could lose half of it and not notice seems incomprehensible.

But I was someone with a full visual field until five minutes ago, when she informed me that I wasn’t.

You don’t know what you don’t have

It’s like that saying, you don’t know what you don’t have. Or something. I mean I don’t have a house or a Chanel handbag but you catch my drift. I didn’t know I had lost nearly half my visual field. Presumably it didn’t happen overnight, it must have occurred over years.

When I was fifteen I noticed that the whiteboard at school was a little blurry. With the sense of pride that only a teenager can have for doing basic self-care, I phoned up the opticians and made an appointment. Then got my mother to drive me there.

‘I need to refer you to the hospital for an emergency appointment,’ said the optician back then. He had looked into my eyes and seen something. Namely, swelling of the optic nerve. I duly went off to hospital some weeks later and, after an ultrasound on my eyes, was informed I had Optic Disc Drusen.

It wasn’t as exciting as swelling of the optic nerve. In fact, it wasn’t even a problem, just deposits on the optic disc. The term ‘benign’ was mention. A fun word to learn at 15.

Apart from mentioning the drusen to my subsequent opticians over the years, I thought no more about it.

And yet here I was, thirteen years later, sitting in an optician’s office and being told that if these results were true, the DVLA would confiscate my driving licence. Confiscate. Like I’d done something illegal and couldn’t be trusted with a piece of pink plastic.

The surreal feeling of sitting in a doctor’s office, waiting for results

I started crying. I didn’t even drive. I hadn’t really since I’d passed ten years previously. I’d meant to, it just became and increasingly frightening prospect and I’d never been in a position where it was truly necessary.

But there’s a difference between using your driving licence purely for buying alcohol and having it confiscated by the DVLA. There’s a difference between not driving and not being allowed to drive.

My optician realised the affect her shocked words were having, ‘oh don’t cry! I’d hug you,’ she said, ‘but I’m not allowed.’

I tried to control the tears, feeling like an idiot. ‘I’m over 16,’ I said, a half-hearted attempt at a joke.

My partner collected me in his arms outside, unsure of why his girlfriend was crying after a routine eye exam. All I had wanted was a new pair of glasses.

It reminded me of something that happened to my sister when she was 20. She’d gone into hospital after experiencing heartburn only to come out with the information that she only possessed one kidney when they gave her an ultrasound.

Like I said, you don’t know what you don’t have.

I left the opticians with a deep sense of confusion. I’d done the visual field test twice — same result. About 40% loss. How could I not know?

The optician would be writing to my doctor in order for me to get a referral to the hospital. The same hospital I went to at fifteen. They’d have better tests, she’d told me.

Dmitry Ratushny

I was only in the UK for a few weeks. I had been sailing around the Atlantic for two years and was making a flying visit before going to Austria for five months. I didn’t even have time for a referral I argued with myself.

I held my fingers out to the sides and moved them until I lost them from view. I walked alongside my partner and we compared what we could see.

Can you see me? Yes, can you see me? No. What’s the furthest you can see to the side if you look straight ahead? I can see the front door of Boots on the left and the letterbox on the right. Wait…what letterbox?

I stood with my arms out in a V shape and compared my V to my partner’s V. It didn’t feel very scientific and it’s not as though peripheral vision just stops. There isn’t a line of vision and then a line of black. It just…peters out.

So I prevaricated further. I prevaricated for a year.

I don’t drive, I said to myself, so it doesn’t matter. I just did an Austrian ski season and I didn’t crash into anybody, so my vision must be fine. I was probably just tired that day at the opticians. I’m fine I’m fine I’m fine.

I had done so much Googling of peripheral vision loss caused by optic disc drusen that I was basically a certified Google Doctor. I read studies, papers and looked at test results from visual field machines, comparing them to mine. What I took away from that, was that it couldn’t be reversed. It couldn’t even be stopped. It couldn’t be treated. I would never get back any lost vision.

Most medical issues are easier to deal with when you know its treatable. You have a problem, you take the treatment, the problem goes away. It might be deeply unpleasant, but one day you know, or hope, it’ll be gone. This wouldn’t be gone. This would be me.

The final stretch

Almost a full year had passed and I was back in England. I had finished my sailing adventure, the skiing was over, I was finding a house to rent and settling in to work full time again. I was insured on the car. I wanted to get over my fear of driving and get myself around like a normal person.

But I couldn’t drive until I found out, once and for all, if I had truly lost half of my vision. How could I live with myself if I crashed because I couldn’t see. Peripheral vision is pretty important for driving. You could go further than that, you could say it was crucial.

So I made another appointment with my doctor to get a referral.

‘You should really have got this seen to by now,’ he said. I squirmed in my NHS chair.

‘I know but…’

He sent me for a blood test to rule out diabetes type 1 and I spent the weekend Googling it to death before getting the results. No diabetes. Phew.

I hate visual fields tests. Or, in fact, any kind of optical test. I always feel like I’m failing. So I sat on the stool in the hospital with my chin on the little chin-rest and peered into the screen with an eye patch covering my left eye. Like a partially-sighted pirate.

I walked into the consultant’s room having rid myself of the eye patch but still feeling vaguely piratical. Albeit one walking the gangplank after a particularly futile parle.

‘I’m going to send you for an MRI,’ he said, ‘to rule out a stroke and a pituitary tumour. If it’s not those, then it’ll be the drusen.’

I nodded. Sure, an MRI, great. Tumour, love that word, it’s in my top 10.

‘Why was this visual defect discovered in September 2016 but you’re only getting it check out now?’ he asked.

‘I was travelling a lot and only back for short amounts of time in between,’ I said.

He nodded and raised his eyebrows, ‘well, it’s a pity you went travelling really.’

I left and stumbled back home, the afternoon winter sun blinding me as it crashed through the gaps between buildings. My pupils were drug-addled, almost none of my irises showing. I shielded my eyes from the sun to cross roads, a caricature of a person in sunnier climes.

It’s a pity you went travelling.

Was it? How could that be so, I wondered.

What was I supposed to do with my life, sit around on the doorstep of the NHS waiting for something to go wrong, just so I could nip it in the bud the moment it attacked? And if this was caused by the drusen — which it almost certainly was — nothing would’ve stopped it anyway. It was just an inevitability. Tiny calcium deposits having a party on my optic disc that no corporeal police could ever break up.

And even if it wasn’t. Even if it was a stroke, if I hadn’t noticed then it didn’t matter where I was in the world. They don’t just happen in England. And a pituitary tumour? Well I suppose it could’ve been diagnosed earlier, but again, I could hardly kick my heels around here waiting for something I didn’t know existed to show up.

So no, I thought, it wasn’t a ‘pity’ I went travelling. My vision might not extend to the farthest reaches of my right hand visual field but I still saw and did a lot of things that changed my life.

And at the end of the day, this won’t change my life. I’m not blind, I’m just not seeing what I didn’t know was there.

Update: In August 2018 I lost a whole lot more sight thanks to the drusen, you can read about it here.

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  1. Thorie
    February 16, 2018 / 8:56 am

    Glad you are home, glad they were able to tell you what was happening with your vision, and so extremely profoundly thrilled that you are living your life. You do what you want when you can while you can. Experiences, adventures, memories, never regrets. 💜

  2. Shannon
    February 26, 2018 / 1:03 pm

    With no way to “fix” the drusen, going travelling and living life to its fullest was the perfect answer. We have only one life. Best to life it.

  3. Rachel
    March 4, 2018 / 2:07 am

    I have just stumbled across this article whilst procrastinating on a late night uni essay sesh. I thought I would reply because you have captured my sentiment exactly. I too have Optic disc drusen. I am 22 and have been diagnosed for a little over a year now. During a routine eye test the optician identified an issue and immediately contacted my local hospital (I was due to go on a study exchange to Canada just two weeks later). Luckily the hospital ruled out intracranial hypertension and other issues requiring immediate intervention within a few weeks. I was advised to stay and wait but, its a good job I didn’t as the hospital didn’t follow the issue up until I prompted them on my return (5 months later). I plan to go to France next year, meet new people, learn about the culture and learn as much of the language as possible. If this condition teaches us anything, it teaches us to take chances and to live a life that is full in the moment.

    I loved your article.
    Thank you for this.

    • Kira
      March 4, 2018 / 1:04 pm

      Wow, I’m glad you’ve got on and done this things you want. As far as I can tell, there’s nothing they can do about Drusen and as long as there’s nothing else wrong, why should we wait around and let it dictate our lives? I’m glad you like the article, thanks so much for reading. Going to France sounds like a great idea, I’m thinking about doing the same!

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